Moonbeam Posted November 1, 2019 Share Posted November 1, 2019 So, had to digest my husband’s results on Tuesday from his CT/TAP of thorax. Abdomen and pelvis. Well, carbo/abraxane/keytruda didn’t work. I prepared myself however, had a few surprises we weren’t expecting. Quite honestly, as we come up on a year of this battle, not sure it’s really registering, as I’m in “the mode” again. Took me a day to gather it all, cry/scream and comfort, and now I’m ready to move. Which way...I’m not sure. As you all know, he had a left pneumonectomy dec 2018. Started chemo at end of January 2019. (Cisplatin/taxotere 4 rounds 3 weeks apart) after the 2nd cycle, Cisplatin discontinued due to tinnitus (should have lowered dose but not touching That) and the last two cycles had taxotere alone. End of April scan showed NED. Another bump, unrelated and in July cancer came back. Spine L5 dokey include. Had radiation and kyphoplasty. Then in started the protocol above. here we are today. Didn’t work. He’s been admitted to get pain (yet again from tumor in L5 / hits nerve) under control and now they are recommending docetaxel (taxotere) and cyramza, which would start next Friday. However, we learned from our second opinion at MD, that he has a T Cell protein match???? this is where I’m CLUELESS as he has no other marker at all!!! We, as you can see, my husbands cancer is very aggressive. Squamous/poorly differentiated and I may add, his tumor in the left lung and the one in spine L5 always extends! Wtf! Why can’t it be just round and no extension? 🤦🏼♀️ regardless, this trial could be the miracle that kills and shrinks the tumors bc he expresses the protein marker. However, it may not. However, taxotere worked for him before. Will it work again with cyramza??? What was seen in his scan prior to keytruda grew AND it’s now in the right hilum and medial right lower lobe. 😩 do we do plan b (taxotere/cyramza) first and then The T cell infusion/ trial or Vice versa? Taxotere worked before why wouldn’t it work again?’! I have a call at 9/9:30 tomorrow morning to ask questions, and as you can see I don’t know much about this T cell protein he has...all I know is they want him at MD as he’s eligible and they want to get started. so now I’m in the middle trying to figure out which way we should go?!? 🙏🏻 Alright my voices of reason and guidance and trying to figure out what I’m writing in regards to his T Cell protein??? Need help with some guidance. Xx Link to comment Share on other sites More sharing options...
Tom Galli Posted November 1, 2019 Share Posted November 1, 2019 Moonbeam, This is complicated. First complication is what you or your doctors mean by T Cell protein match. The immunotherapy marker PD-L1 is a protein and its presence is normally checked by laboratory biopsy. Is a PD-L1 match what your doctors are calling a protein match? Alternatively, there are two very new cancer therapies under trial. CAR T-Cell Immunotherapy, also called adoptive cell immunotherapy, was determined to be the cancer treatment advance of the year in 2018. Dramatic successes have been demonstrated in acute lymphoblastic leukemia, Non-Hodgkin lymphoma, and Multiple myeloma. Is this the trial that is suggested as a future treatment? Here is another example of a trial using CAR-T Cell Immunotherapy in lung cancer. So, I would get clarification on what doctors are calling a T Cell protein match and further if this "match therapy" is CAR-T Immunotherapy. If so, it may be good stuff. I have no idea on which treatment could be better: CAR-T Immunotherapy or your plan b (taxotere/cyramza). Stay the course. Tom Link to comment Share on other sites More sharing options...
Moonbeam Posted November 1, 2019 Author Share Posted November 1, 2019 Good Morning, Tom. Yes I believe that is what it is. It’s ringing a bell ;). Unfortunately, when we received the call last month, we were in the car. I was driving and the info was hard for me to “get” as I was driving and my husband was a bit out of it. He does not have the the presence of PD-L1, that I am certain of. I’m eager to hear what the dctr has to say and as soon as I know more, I’ll be able to give more details. I know the nurse said on the call while driving, that his oncologist at MD was happy to see he had this protein as many do not and he was eligible to start if and when the cycle of abraxane/ carb/keytruda stopped working. Well, it clearly didn’t work. Link to comment Share on other sites More sharing options...
Rower Michelle Posted November 1, 2019 Share Posted November 1, 2019 Hi Moonbeam- My hubby and I had this discussion when I was diagnosed- when offered the choice between a novel experimental therapy and chemo- What we we do? Pros and cons to each side of this coin. If you choose the trial then I would assume hubby would be closely monitored, if not successful than chemo being held in reserve? It’s not too often oncologists get happy over results. Maybe this is the breakthrough treatment, not a miracle but a result of new science. In the ALK Positive Community there were some gutsy people who entered into Phase I clinical trials and that’s why I’m alive today. Please keep us posted, you’re in my prayers Michelle Link to comment Share on other sites More sharing options...
Robert Macaulay Posted November 1, 2019 Share Posted November 1, 2019 Michelle Like your statement goes with this song, Link to comment Share on other sites More sharing options...
Moonbeam Posted November 1, 2019 Author Share Posted November 1, 2019 Hi. Update. Call is moved to 4pm EST in the meantime, the NCT number is:0397333 and the study ID number is IMC-C103c Looks to be new and it’s sponsor is Immunicor. I wish I knew so much more about all of these trials etc. Doesn’t seem like I’ll be able to find the success rate? He would be hospitalized for 3/4 weeks the nurse did tell me that. 🤦🏼♀️ tic-toc any questions I should be asking for those of you that are so versed in trials/studies? Link to comment Share on other sites More sharing options...
Rower Michelle Posted November 1, 2019 Share Posted November 1, 2019 Wow. I just looked this up on Clinical Trials.gov. Talk about hot off the press. This is a really early phase trial- first in human which means there will be no results. I guess I would ask about potential adverse events, what type of progress did they see en vevo (mouse model?) that led the research team to believe this approach could be effective in humans. Not all the costs are covered in clinical trials (really?!!) so definitely ask about out of pocket costs. How does the team plan on communicating with you? What is the termination criteria? People get really frustrated in clinical trials because study results are not discussed with participants. There’s been a lot of progress in some of the Phase I lung cancer trials that are really knocking it out of the park. Let us know how it goes. Link to comment Share on other sites More sharing options...
Moonbeam Posted November 1, 2019 Author Share Posted November 1, 2019 My goodness...wish you could take the call I saw the cost issue and not all covered. That’s one of my questions for sure.and yes, right off the press indeed. Should we wait and do after he does the taxotere / cyramza then do the trial so we know how others have done? My mind is racing!!! I will keep you posted!!! Link to comment Share on other sites More sharing options...
Tom Galli Posted November 1, 2019 Share Posted November 1, 2019 Moonbeam, When I went through my trial or conventional therapy decision crisis, I had a trusted general practitioner in my corner who understood the science and risks. Do you have a trusted medical practitioner who is not tied to the study who can advise you? I can't believe that Immunicor is not paying for all medical costs! That is most unusual and I personally would be very hesitant to join this type of study. While Michelle points out this trial is a phase 1 effort, note the method has been used in humans for three blood cancers. See my CAR T-Cell Immunotherapy link so there may be stronger evidence than a mouse model. Read this blog. I've referred other forum members to the National Cancer Institute Intramural cancer treatment program when treatment options were problematic. You might summarize your husband's case in an email to the point of content listed in the blog. Perhaps they have some ideas. Stay the course. Tom Link to comment Share on other sites More sharing options...
Tom Galli Posted November 3, 2019 Share Posted November 3, 2019 Moonbeam, I just happened on this article in the Washington Post about CAR T-Cell Immunotherapy. You may find it interesting. Stay the course. Tom Link to comment Share on other sites More sharing options...
Moonbeam Posted November 3, 2019 Author Share Posted November 3, 2019 So, here I go in trying to explain what I’m coming to understand or at least try to. It’s not easy. I loathe trying to write it when I haven’t learned enough about what he’s about to begin...my husband has done chemo twice now. And this last time with Keytruda. Standard of care treatment. Thank goodness he will always have it. Every Person hopefully with cancer will have it. However, he’s a “match” for this study. Whether it’s new, no statistics of its efficacy or failure, who knows, but we’ve tried the standard care and it’s not working. 😩 we can keep going right, with standard care OR we can go left and at least try it. What does he, what do we have to lose? Here’s what I know...he won’t die from trying this. It’s one month. His new chemo cycle (with one drug he has had) wouldn take 3 mos and then he will be re- scanned and we know with that one (taxotere) it came back 2.5 mos later or in the second round with keytruda, it just didn’t work. So, this trial or study is one month, new, totally different treatment And he’s Has a match... why not try??? This study is a variant of CAR T except this is more natural? My husband gave his blood and he’s a match. If I understand correctly, the immunocore study is taking T cells targeted against the tumor and his T cells are already matched for his HLA type. They can give it to him directly because they’ve already done the matching and they don’t have to be engineered. (Hope I’m getting this right) If it works, doesn’t always, but if it does, it does by stimulating his own immune cells and divide and set up shop and hopefully work to arrest the growth, maybe have it make some disappear or who knows. All we know is we have nothing to lose at this point and maybe something to gain!!?! We are going over Tuesday for a meeting on Wednesday to ask about many questions that you mentioned Michelle and Tom. I know he has to be admitted for 3 weeks to be watched and closely monitored. The other questions: our cost (me living there for a month ) termination criteria, and my husband had a few but left my 3” binder and bag at hospital here in Tampa tonight so ask away... and again very similar to CAR-T but not with the side effects since his is directly given as they’ve done the matching and his T cells matched his HLA type???? may not be getting all of the lingo correct but I’m trying to understand it all. Soooo not easy . xx Link to comment Share on other sites More sharing options...
Rower Michelle Posted November 3, 2019 Share Posted November 3, 2019 there comes a time where it’s time to set logic aside to make way for faith. Faith in God, the medical team, the love of your husband and his will to live. Clinical trials can be like threading a needle, the criteria is pretty narrow so most people are not likely to qualify, hence the excitement of the Houston team. The GO2 Foundation has a brainiac researcher assigned to clinical trials. It might be worth a call to see what they know. The hospital will be well versed in managing living expenses (see the American Cancer Society) for some programs. One of my former managers lives in Houston, she gave up her car because Uber is less expensive. You can do this! I’m amazed by your strength. Link to comment Share on other sites More sharing options...
Moonbeam Posted November 5, 2019 Author Share Posted November 5, 2019 So...update...we leave today for Houston for a few days. We spoke with my husband's oncologist (here) and he said "I would absolutely go for this trial. If your tumor qualifies you for it, even though it's experimental, it offers my husband a better chance for a good response. He has seen good responses to a similar trial and he wishes him the best." He's on board and will continue being involved with his care. So off we go for a few days and I will report back soon. Thank you all so for being there for me. So blessed to have you all XX Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted November 5, 2019 Share Posted November 5, 2019 Safe travels and please keep us updated! Link to comment Share on other sites More sharing options...
Rower Michelle Posted November 5, 2019 Share Posted November 5, 2019 As the people in KS say- follow the yellow brick road. Rock on sister. Godspeed. Link to comment Share on other sites More sharing options...
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